The role of outreach workers in care coordination for teenagers and young adults with cancer: The BRIGHTLIGHT_2021 programme.

Abstract

Purpose: Teenagers and young adults (TYA) with cancer have distinct developmental, psychosocial, and clinical needs that require age-appropriate care. Healthcare policy in the United Kingdom advocates care in centralised specialist age-appropriate TYA Principal Treatment Centres (PTCs). The responsibility of coordination and delivery of 'joint care' is reliant on outreach workers who bridge the gap between the PTC and hospitals and support young people closer to home. We aimed to explore outreach workers' experiences of their role in coordinating TYA cancer care.

Method: Semi-structured qualitative interviews were conducted with 10 outreach workers and care coordination staff working across PTCs and designated hospitals in the United Kingdom. Data were analysed thematically using framework analysis informed by rapid assessment procedure (RREAL RAP) sheets.

Results: Outreach workers described their role as providing coordinated care and liaison across multidisciplinary teams, addressing TYA needs and filling a perceived gap in services. Participants reported that their role contributed to continuity of care and facilitated equitable access to age-appropriate care closer to home. Potential barriers included isolation due to large geographic coverage and travel time and limited staff understanding outreach roles, alongside inconsistent referral routes. Outreach workers emphasised the need for skills such as communication, relationship-building and strong clinical knowledge.

Conclusions: Outreach workers described their role as highly skilled, complex and varied. Incorporating the identified facilitators and barriers into outreach strategies, including integration into healthcare settings, increased resourcing, and staff awareness may help inform future TYA care coordination, workforce planning and integration of outreach workers into routine TYA cancer healthcare settings.